It doesn’t take long, if you are passionate about autism advocacy, for autism politics to rear up. I am going to touch on just three.
The first one I will touch on is attitudes towards Autism Speaks (also known as A$ for short).
There are many blogs as well as many facebook pages about this – all of which outline the issues far more eloquently than I ever could so I will only be giving brief summations. No sense in reinventing the wheel. Nor will I list all the good blogs or Facebook pages that deal with this but there are plenty that provide some great reading.
As an advocate you are expected to choose sides. Most Autistics choose against A$ because they have no autistics on their board, they actively silence autistics point of view (e.g. on their FB page, they don’t give them opportunities to present etc), they promote Autism as an epidemic to be “crusaded” against, they support hideous therapies (ECT anyone?) and so on. However….or but. What about those autistics who only ever meet another person like themselves through Autism Speaks? What about those who only ever find out about services through A$? So I don’t promote them, I will argue against them and many of their methods BUT I won’t judge parents who have nothing else – because it is up to us to provide or be the something else. I will educate parents and get them to try and find other sources, other groups, but if they can’t find any alternatives I won’t judge them – they get enough judgement from society. We have to have more nationwide groups in America and across the world broadcasting a better message and providing networking opportunities for autistics and their families. Our work to change society’s attitudes will achieve more.
As for autism advocates who support A$ I will try and talk with them – some of whom (somehow!) see nothing at all wrong with A$. Education is the key for both of these groups. I am however mindful that as yet the autistic community is a long way off being united enough or organised enough (darned executive functioning issues and lack of spoons) to rise up and be that alternative everywhere, all across America and the world. There are good groups but they are not yet widespread enough. And funding is and will likely continue to be an issue – because there seems to be more money for diseases and disorders, especially ones involving children (and ignoring adults).
By the way alongside A$ are politics around the use of a puzzle piece. I’m not in favour: I am not a puzzle, my child was not a puzzle to be solved or fitted together. And the colour blue, which is mostly tainted by its association with A$. I’m not in favour of the “Light It Up Blue” campaigns (I know not all are related to A$, especially in Canada). There are alternatives such as gold or red (these two were both by autistics for autistics) or even multicoloured. I go with multicoloured, for two reasons:
1. it represents the spectrum and recognises those of us who are #actuallyautistic often fall anywhere on the spectrum at different times in our lives. Autism is not stagnant.
2. I feel it is more inclusive as it encompasses those who may be sexually or gender fluid – often more common for those on the Autistic Spectrum.
3. Multicoloured for some conveys a sense of hope, to counter the doom and gloom messages often put out by the likes of A$.
The next area of autism politics I will touch on is the whole ‘cure’ debate.
I, personally, do not want a cure. I do not see Autism as a disease, or even a disorder (despite the DSM). It may be made up of deficits in terms of getting a diagnosis but quite frankly I prefer to look at the strengths we bring through our neurological difference. https://jeanettepurkis.wordpress.com/2015/03/12/the-dsm-5-autism-criteria-rewritten-with-neurodiversity-in-mind/
My autistic child does not want a cure – they have learned to embrace their autistic self and celebrate the differences. The challenges are still present but they are not the most dominant features for their life because they choose to focus on the positives and strengths.
However, some autism advocates have a different point of view (yes, really!) They are the ones who rail against Asperger’s being included under the umbrella of Autistic Spectrum, they are the ones who accept functioning labels to define people’s Autism. They think those who want a cure should be able to have one. They think those who “suffer” from their Autism should have one. What they overlook is, that if a cure were ever to be available I doubt very much whether some Autistics would get a choice about being cured -their parents would make that choice for them, or they might feel pressured to agree to such a cure. Personally I think any such ‘cure’ will be more likely a series of genetic markers able to be detected prenatally and some parents-to-be will simply make the choice not to proceed with the pregnancy. My view has been derived at based on what happened when they found the single chromosome marker for Down Syndrome – the abortion rate for those expecting babies with Down Syndrome rose to around 94%.
Autistics are people, people who often have social and communication difficulties. These are compounded when they have different points of view that they are passionate about. Sometimes those differences unleash hatred filled words from keyboard warriors.
I have seen authors attacked for their work, their work which has often improved understanding of Autism for both ourselves and those who are more typically brain wired. Even prominent authors such as Tony Attwood are not immune (and others I won’t name here).
I have also seen advocates attacked and called treacherous. John Elder Robison was one because he tried to work with A$ to change attitudes from the inside out.
I have seen those who make mistakes, being vilified. Many are judged for eternity by Autistics with no hope of redemption. Case in point: at the present time there is a great deal being made on the internet about a new brand of clothing for Autistics. This brand is designed to be easy to wear and put on for those who struggle with such tasks. Many of the items can be worn frontwards or backwards. The clothing also has inserts for GPS devices so young Autistics who are inclined to wander, can be found. BUT it has also come to light that the person involved in this, was also a filmmaker involved in the horrid Autism Speaks film where an autistic mother spoke (in front of her child) about wanting to drive off the cliff with her autistic daughter. So because of this, I have seen many Autistics calling for a boycott of the clothing line. Understandable, I get it. But will this change the minds of parents, neurotypical parents desperate for the solutions this person is providing?
Then there are the divisions: parents of #actuallyaustics, professionals who ‘deal’ with #actuallyautistics, and lastly #actuallyatutistics themselves. Even within this latter group there are divisions. There are those who want to be the leaders, the spokespersons and who resent others who take up the baton because it is not who they want. Well they don’t get to choose. Most of us #actuallyautistics have spent a lifetime advocating for ourselves and/or our #actuallyautistic children.
Just seems like more politics. I get that politics is needed to effect change but I am not sure this will work to achieve that or just achieve more divisions. Having dialogue and working collaboratively might actually achieve more in the long run. At least that’s my personal approach.. Life is way to short to spend it being angry all the time, fighting all the time. I choose my battles because I have limited energy. I would rather spend it actively helping others, than fighting against things I am unlikely to be able to change.
I consider I am one of the lucky ones. I am strong, I am in autism advocacy for the long haul. I’ve been in it for my whole lifetime after all, and for my child’s lifetime as well. I may not have had my diagnosis long but self-advocacy is something I have always done, nowadays it is just more widespread. I want to help others navigate their way. I want to find better ways of doing what we do. Those who are not strong, fall by the wayside, but I am still here.
We have a long way to go before we as Autistics are united against a fragmented and crumbling system, especially in my country and likely in yours as well. I hope we can get there together, collaboratively. I want human rights, I want civil rights, to apply to me, and my contemporaries on the spectrum. But wider than that (I’m learning to see the big picture) I want to see these rights extended to all disabled (or differently abled) people that we share the bond of humanity with.